Advocacy

Arthritis advocacy means we advocate for people with arthritis. Advocacy gives people with arthritis a voice on issues that affect them every day. To do this, we raise awareness about arthritis and promote your needs at every level. We engage with policymakers over issues that affect people with arthritis, and we partner with others to work together in your best interests.

There are two types of advocacy support we can provide through Arthritis Assist - systemic and individual.

Arthritis advocacy can be systemic, focusing on organisations that set policies such as the government, Health NZ, Pharmac and Work and Income (WINZ) to ensure the voice of people with arthritis is heard. Whenever policies or actions that will affect people with arthritis are being considered, we will advocate on behalf of people with arthritis. 

The second type of advocacy is individual advocacy, which provides information and support in day-to-day living. 

What we do for systemic advocacy

We make submissions, work with sister agencies on common areas of policy, meet with MPs, identify concerns such as employment, access to rheumatology and medications and raise them with the relevant agencies.

What we do for individual advocacy 

We can provide help and support for people needing advice and guidance on issues they are struggling with. This includes a range of areas such as working with health professionals, making a complaint about a health service, how the public health system operates, who to talk to about housing, home help, transportation, or a range of other issues that can impact people with arthritis. 

Arthritis NZ is calling for more rheumatologists to meet the recommended ratio of one full-time equivalent rheumatologist in the public sector per 100,000 people. 

Arthritis NZ advocates for:  

• additional funding for specialists to practice in the public system 
• incentivising rheumatologists to practise within poorly serviced communities in New Zealand
• improving opportunities for nurses to develop as nursing specialists in this field

The Royal College of Physicians (RCP) recommends 1.16 full time equivalent (FTE) rheumatologists per 100,000 people in the public sector. 

New Zealand has a problem with filling specialist vacancies. In 2018, only four DHBs reached this level when private FTEs were included. The need for specialist rheumatologists is more keenly felt in rural areas than in the bigger centres. 

People are experiencing long waiting lists and delayed access to rheumatologists. The faster patients are seen by a specialist, the more effective their treatment and management of their condition. The number of people with conditions such as arthritis is only going to grow. 

Arthritis NZ wants to see an increase in the number of publicly funded rheumatology positions. The New Zealand rheumatology specialist workforce would need to increase by 13 FTE rheumatologists to achieve the RCP recommendation. 

It takes at least 7 years to train a rheumatologist. New Zealand cannot afford to train specialists and then see them leave to work overseas because funds for public sector work are underfunded here. 

We also recommend greater effort to recruit and train specialist nurses to support rheumatologists in their practice. Skilled specialist nurses are an important support service for specialists and patients with challenging chronic health conditions such as severe arthritis. 

Why are rheumatologists important? 

People with symptoms of inflammatory arthritis (IA), that is, arthritis that is caused by an immune system disorder, who see a specialist, often do not present early enough to gain maximum benefit from the medicines that can alter the course of their disease. These are called disease-modifying antirheumatic drugs or DMARDs. 

The importance of rheumatology care for people with IA has been identified in research that shows continuous care by a rheumatologist is strongly associated with regular use of DMARDs and leads to improved health outcomes. Those who receive DMARDs in primary care, that is, prescribed by GPs, not specialists, are significantly less likely to continue with this treatment. Reviews of prognosis and outcome overwhelmingly support the contention that early IA care is optimised when treatment is managed by a rheumatologist, rather than a GP or other consultant. 

Rheumatologists rely on the information supplied by the GP to triage patients with suspected IA and prioritise accordingly. The history of symptoms, clinical markers of inflammation, positive rheumatoid arthritis antibodies and radiological assessments are all important measures of urgency and used by rheumatology services to prioritise and manage waiting lists. 

In New Zealand, where waiting lists are used to ration scarce health resources and monitor health system performance, referral to specialist services through managed and prioritised waiting lists may lead GPs to delay referral until a pre-determined threshold is reached for referral, especially because individuals will be referred back to the GP if the referral is deemed inappropriate (Cumming, 2013). 

As of January 2015, the standard expected for waiting time in New Zealand for First Specialist Appointment (FSA) was reduced to four months after referral. The main aim of this maximum was to improve the consistency in the selection and prioritisation of patients, and for a greater proportion of patients to be treated in priority order and within prioritisation timeframes. 

The quality of information the GP forwards to the rheumatologist can impinge on the acceptance of the patient for assessment and the quality of the triage.

Arthritis NZ works in cooperation with Arthritis Australia to promote the importance of packaging being easy to access for people with arthritis. 

The ability to open packaging easily is an ongoing challenge for people with arthritis and has significant implications, including the ability to access food and medicines. In extreme cases, people with arthritis may be unable to use certain packaged products altogether or may experience considerable pain and difficulty during the use of other packaged products. Often individuals with arthritis can experience limited dexterity and fine motor coordination and typically have weaker grips than those without arthritis. 

Research by the Georgia Tech Research Institute outlines a range of reasons why it is more challenging for someone with arthritis to open certain packaged products. Inclusion of these guidelines in the Code of Practice provides users of the Code the opportunity to benefit from world-class research into these issues to inform their packaging design processes. However, it is not just people with arthritis who have difficulty with certain packaged products. As someone ages, they experience a decrease in dexterity and strength. With the likelihood of arthritis increasing with age, and the number of people in New Zealand aged 65 or older projected to increase by 20% between 2017 and 2022, this represents a larger group of society that will find packaging an increasing challenge. 

Arthritis NZ prepares and submits submissions to the Health Select Committee to advocate for better services and outcomes for people with arthritis in New Zealand.

Medications are important in the treatment of all forms of arthritis. Medicines assist people with: 

• managing symptoms – particularly pain
• preventing damage to joints
• maintaining joint function 

Access to medicines is a subject that promotes debate and media coverage in New Zealand. Arthritis NZ is not seeking fundamental change to New Zealand’s system for purchasing of medicines, but we do argue for additional funding for Pharmac. We monitor medications awaiting funding from Pharmac. 

Background 

During the 1980’s drug costs were going up rapidly so in 1993 the Government established the Pharmaceutical Management Agency (PHARMAC) to ensure best value for money for purchase of medicines and medical devices in New Zealand. PHARMAC’s role is to make decisions about which medicines are funded by the Government and to use its budget to subsidise medicines. It negotiates good prices for medications by dealing directly with large companies and where possible leveraging price benefits from competition and multi-product agreements. 

Expert clinicians from the Pharmacology and Therapeutics Advisory Committee (PTAC) advise PHARMAC on medicines for purchase and their priority for funding.   

Medicines New Zealand is a membership organisation representing the pharmaceutical industry in New Zealand. It aims to improve public funding of medicines and believes that New Zealand’s budget for medicines is too small. According to Medicines New Zealand patients in New Zealand are not getting the best possible access to medicines. 

Treatment pathways 

The first line of treatment for the type of arthritis where there is an immune system issue is Disease-Modifying Antirheumatic Drugs (DMARDs). These are used to suppress the immune system when it is attacking healthy joints. 

Research into treatments for this type of arthritis shows that early DMARD treatment produces the best possible disease outcomes. DMARDs can delay damage to the joints to such an extent that a person given the same doses later in the course of the disease will not see similar benefits. 

Access to DMARDs is not a problem in New Zealand as these medicines are publicly funded. Access is more likely to be in relation to the time it takes to get an appointment with a rheumatologist to prescribe them. 

A newer type of medicine, that is, biologics, are prescribed when other medicines are ineffective.    

What is a biologic? 

A biologic is any pharmaceutical product manufactured in, extracted from, or semi-synthesised from biological sources. They (or their components) are isolated from living sources -human, animal, plant, fungal, or microbial. Biological products include vaccines, blood and blood components, allergenics, gene therapy, and therapeutic proteins. Biologics belong to the cutting-edge of biomedical research and may in time, treat a variety of illnesses that have no other treatments available. 

Biologics are relevant in treatments for juvenile idiopathic arthritis (JIA), rheumatoid arthritis (RA), ankylosing spondylitis (AS) and psoriatic arthritis (PsA) These drugs can assist people to achieve remission or a state of low disease activity. RA and AS in particular, can be treated using biologics. 

Spend to save 

We know that early treatment can provide substantial improvement in a patient’s quality of life. While we acknowledge the cost of new medications, particularly biologics, we believe that not funding them sufficiently adds cost in other areas including; 

• increased hospitalisations
• reduced ability to work with the subsequent need for benefits, and
• an increased need for carer support 

Arthritis NZ advocates for clearing medicines for arthritis on the PTAC waiting list and increased funding for Pharmac. These are important steps to improve access to effective medicines for people with arthritis.

Arthritis New Zealand advocates for: 

• Health New Zealand viewing gout as a priority
• Setting and delivering the target of 55% of people with gout being on a managed programme by 2028. Health New Zealand to report annually to the committee progress against this target
• Health New Zealand to build awareness about the causes and management of gout and build on the improved accessibility of allopurinol following its reclassification with funding for pharmacies to undertake added responsibilities

Background 

New Zealand has the highest per capita prevalence of gout arthritis in the world and gout arthritis is now the second most common form of arthritis in New Zealand. Māori and Pacific people have a greater genetic predisposition to develop gout arthritis than other ethnicities. 

Gout arthritis is caused by a build-up of uric acid in your blood, which forms sharp crystals in the joints. Gout is an easily managed form of arthritis – effective medications are already funded by the Government. Research evidence shows most gout arthritis is genetic in origin, although diet and other lifestyle factors can precipitate or exacerbate attacks in people with gout arthritis. 

Gout arthritis is underdiagnosed and under-treated. In primary care there is currently a lack of effective/inadequate management of gout arthritis: 

Māori and Pacific peoples have higher rates of gout arthritis than other ethnicities. Māori and Pacific men are affected at a younger age than other groups. 

The most at-risk populations (Māori and Pacific men) have the lowest rates of use of medicines that work to prevent gout attacks. 

Gout contributes to unemployment and time off work. 

Most gout arthritis can be managed in primary care with effective medication that lowers the amount of uric acid in the body.  For example, allopurinol is an effective preventative treatment that works for most people and is already subsidised by Pharmac. 

Recently allopurinol was declassified by Medsafe meaning that after implementation allopurinol will be prescribed by a Dr and then pharmacists will be able to dispense regularly and titrate the dose as required to ensure the patient is receiving the most appropriate dosage. 

Gout arthritis is a life-long condition therefore treatment must be long-term, like the treatment of high blood pressure or diabetes. The aim of treatment is to have people with gout reduce their uric acid level to the 0.36mmol/L uric acid target to prevent further gout attacks. 

Impact of gout arthritis 

Gout is more than an intensely painful condition that can lead to joint damage and prevent people from working and participating in their communities. People with gout are also more likely than those without gout to die at a younger age due to cardiovascular and renal complications. Research has shown that those with hyperuricaemia (too much uric acid in their blood) and chronic kidney disease, who are taking urate-lowering medicine, have a significantly reduced risk of cardiovascular events and renal failure, compared to those not taking the medication. Another study found that patients with gout and diabetes who were taking urate-lowering medicine had a significantly lower risk of heart attack or stroke. 

In New Zealand, 40% of people with gout have diabetes and/or cardiovascular disease. Despite this, many patients consider gout to be a condition that merely requires analgesics (pain killers) to control and are not aware of the potential long-term consequences. Raising community awareness about gout is an important role for health professionals in primary care. 

One of the challenges of prevention is supporting people to maintain their treatment, even when they are asymptomatic. While diet and lifestyle changes, such as maintaining a healthy weight, are helpful in reducing risks associated with gout (as with diabetes and cardiovascular disease), urate-lowering medication is usually required to prevent future episodes. 

Benefits of treating gout arthritis: 

• Prevention of gout arthritis attacks reduces the impact on health system spending in both primary and secondary care due to less frequent GP visits and reduced hospital admissions
• Social and economic benefits due to higher social and work participation
• Fewer people receiving a benefit through the benefits system

Our commitment 

Arthritis NZ is committed to addressing the health inequity in the management and treatment of gout arthritis for Māori and Pacific people. We have developed tailored education and support services in regions where funding has been provided; however, many areas continue to have unmet needs.